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COULD MY 10MO HAVE SILENT REFLUX? DESPERATE TO KNOW WHATS WRONG :-( - LONG!!!

(35 Posts)
Dalrymps Mon 08-Sep-08 15:34:41

Firstly, sorry this is sucha long post.

I don't really know where to start. I have posted on here several times about the fact my ds is difficult to feed.

He is now 10 months old, the last time i rememeber him feeding without a problem was when he was about 2 weeks old sad. He's had some really good weeks here and there but then it just goes wrong again.

In the begining, I tried to bf him. I had a lot of problems getting him to latch on so it didn't hurt and briefly gave up at 5 weeks, I then decided I shouldn't hav given up and build my milk up enough to mix feed him until 5 months.

Once I did get the latch sorted through the help of a bf counsellor I thought feeding would be sorted and planned to build up to fully bf again and phase the bottles of formula out but this never happened.

He was very fussy at the breast and most of the time would scream and go red in the face as soon as I got my breast out and then if I got him to latch on he would come off the nipple and keep going on and off constantly then stop all together after about 5 mins. I would then give him a bottle of formula or ebm.

It got to the point where I would try and bf him every time he was due a feed but end up giving a bottle 90% of the time as he would get so upset.

The other problem I had runnig along side this was that he wasn't too keen on the bottle either! It's not like he would refuse the breast and down a bottle. He would also fuss at the bottle. He would take 1 -2oz then pull off then pull away if any more was offered so we would have to burp him, wait about 20 mins then warm the bottle and offer it again. He was stuck only drinking 4oz a bottle for soooo long and the hv would keep asking if I was sure he wouldn't take any more.

He eventually got to the point of occasionally drinking 5oz a bottle but still with several breaks and time in between starting and finishing the bottle.

At 5 months he was fussing and refusing so much when I tried to bf him that my milk supply had dropped dramatically and I no longer had enough hours in the day to keep expressing as I was busy warming bottles and trying to get him to take more etc etc. I stopped bfing at this point.

From that point, bottle feeding him was still a struggle. He was still only taking 4 oz a feed most times and getting him to drink enough milk each day was a real battle.

Dh and I had to really concentrate on not getting stressed whilst feeding him as this only made matters worse. We did manage this and would only give him what he wanted, then we would wait half an hour and offer the feed again. If the milk was refused or if he started puling away, arching his back or crying whoever was feeding him would just stop. We didn't want him to develop a further problem associated with being pushed in to drinking more.

We started letting him taste baby rice, carrot, pear, apple and things like that at 5 and a half months. He was moderately interested for the 1st week then less so after that.

He has been kind of on and off with the weaning. He definately prefers sweet things to savoury but I think that is normal of most babies. I also think he's quite fussy on general.

The one thing that worries me about the weaning is that a lot of the time he just eats tiny amounts. He has started eating more 'proper' food now but will take about 5 mouthfulls then just stop dead, he'll just clamp his mouth shut and take no more, no matter what you do. I never try to force him to eat more but I do offer a bit more on a spoon or sometimes just off my finger (someimes he prefers this). He plays with the food himself but rarely feeds himself more than one bite unless it's something like an organix baby crisp or a biscotti - something that dissolves quite easily.

Anyway, on top of all this we also have the problem that he is slow to gain weight. We have been refered to the paediatrician who said he seems fine and is all in proportion, he said he can't see anything that would want him to do further tests at the moment (the appointment was back in July). He asked if we had any concerns and we mentioned that he is very fussy/difficult to feed and he didn't really seem to be bothered by this and just movd on to the next question.

We have also been referred to the dietician. She said that he is 0.4th centile for weight but 9th for length so has prescribed him high calorie milk to try and build him up a bit and get his weight matching his length. She also gave us tips on how to include the milk in his diet. Again, we mentioned that he is fussy but she also brushed over this as if it was not a problem.

Since being prescribed the new milk (has been on it about 7 weeks) he has been easier to feed in terms of the milk. He has consistently taken the recommended 18oz a day (dietician said this was a good amount along with his food). He still has breaks half way through his feeds quite a lot and never drinks more that 5oz but doen't need to s he has 4 bottles a day. He usually drinks 2 4oz bottles and 2 5oz bottles a day in what ever order he wants.

I think he prefers the taste of the new milk and this is the reason. He was on aptamil before.

He is a constant worry with regards to his food and I would feed him everything the dietician has suggested if only he would take more than a few mouthfulls. Sometimes he takes one spoon full and thats it. He does however like a fomage frais but I can't feed him that all the time!

I have been searching the internet to find any other reasons I could for his poor eating/weight gain and I found information on silent reflux. I will admit he doesn't display all the symptoms of this but does display some.

I've read that babies with this will sometimes only eat small amounts as they know the reflux gets worse if they eat more - Ds does this. That they fuss when you try to feed them - Ds has always done this. That they can cough - sometimes Ds does this. That they can get hiccups quite often - Ds does, sometimes a few times during a meal. Also that they can suffer from poor weight gain - again, Ds has this.

Just today he was sat in his highchair and he burped then a bit of white stuff came up in to his mouth and on to his tongue and he swallowed it again. I've never seen this happen before but was wondering if it is happening more often than I had thought and therefore that he might have reflux?

He used to be difficult to burp when younger and was on infacol for a while which seemed to help. If we didn't burphim sufficiently he used to be sick if we layed him down.

Again, he's not sick when we out him down anymore but I have noticed lots of little white patches on the sheet in his cot as if he is having little bits of milky sick coming up and going on the sheet?

I mentioned reflux to the hv when he was about 4 months old as a possibility when his feding was really bad and it was a cse of only getting an oz at a time in to him. She simply asked 'is he being sick?' and when I answered no she said 'well he can't have reflux then, don't worry yourself reading things on the internet'.

I should mention that when i'm not trying to feed him he is the happiest baby you could ever wish to meet, full of energy, plenty wet and dirty nappies and is bright as a button!

I'm sorry this post is sooooo long, I just didn't want to miss any information. I'm desperate to know whether he's just fussy or whether there may be another problem, something i'm missing.

I've got another appointment with the dietician and paediatrician in the next few weeks so want to know whether to mention my concerns or not.

Any advice appriciated greatly, TIA.

Dalrymps Mon 08-Sep-08 16:08:28

Appologies for all the typos too blush!

nigeltuffnell Mon 08-Sep-08 16:24:41

Wow, you're amazing , your efforts to continue breast feeding are inspiring! I dont really have expert advice but i would maybe try to trust that he wont let himself starve, he may well have silent reflux or just a sensitive tummy, some children take a long time to develop their digestion. I would also take your time with new foods, let him feed himself - as you have been and try high fat stuff like avocado with full fat yogurt...
I know I got completely obsessed with my ds s sleeping habits because they were so very different from every baby I knew or read about, your son sounds like a delight and hopefully with time he'll like more and more foods, babies do tend to get more hungry when they;re more active too.....
You're doing a brilliant job, I hope things improve.

mears Mon 08-Sep-08 16:32:17

Definitely voice your concerns.

Write down exactly how he reacts when feeding - just as you have here. The problem of just mentioning that he is fussy when feeding is that the professionals have not taken on board what you mean. Sounds as if he is more than fussy - he may well have a reflux problem.Do speak to them about it.

likessleep Mon 08-Sep-08 16:33:06

Sounds plausible, my DS had the non-silent reflux and feeding was a nightmare, very similar to yours.
I'd def raise with dietician and paed. I'd write down everything you want to ask/say and maybe keep a diary of foods eaten and difficulties. To be blunt, it isn't just a case of being fussy - I'd write a list of symptoms and say their frequency / severity.
If it is reflux, there are meds available - they need to take this seriously, if your little one is in pain - do you think he is?
Does he gag when he isn't eating?
My DS used to be playing and then he'd just gag as though something was coming back up his throat, get a look of distaste and swallow. Plus, he'd always be coughing and hiccuping.
I wish you luck, but it is def worth raising at your appointments.
Am sure others will post soon, x

FattipuffsandThinnifers Mon 08-Sep-08 16:42:13

Poor you, sounds like you've had a tough time. If I was in your position I would certainly mention your concerns to the paed & dietician at your next appt. It is possible to have reflux without projectile vomiting - not saying your son has it but it's a good opportunity to mention it to experts (rather than just HV) to see what they say. Hopefully they can give you some help.

I know it's frustrating when your baby doesn't eat (mine was very very fussy until he was about 14 months). Most people give you the "oh babies never starve themselves" line which, while it's probably true, doesn't always reassure you does it - especially when you're the one trying to get him to feed 4 times a day and tearing your hair out. Hopefully the high-cal milk will help get his weight up.

FWIW, my DS was also very sicky till he was about 9 months (I had a paed appt made when he was about 7 months but it took so long to come through, by the time it came round he had stopped). In his case I think once he was crawling on all fours (ie not on his tummy, and more upright) it improved.

Hope things improve for you all.

Romy7 Mon 08-Sep-08 16:45:47

maybe suggest to the gp that he prescribes a course of infant gaviscon and trial it for a few weeks/ a month... it sort of worked with dd2 but might give you an idea of whether discomfort etc is an issue. often needs a while though, as once they get into the habit of feeding being uncomfortable, they can display a habitual response to the food even when it doesn't - so he might still fuss for a bit but should settle...
worth a try anyway? we tried a few things with dd2 who has various ishoos, but i think the profs were a bit easier to persuade because of that...

can i ask if the 'new' milk is slightly thicker? it may be that he is finding it easier if it is 'gloopier'? (technical term obvgrin)

i wouldn't worry unduly though - they are keeping an eye on his weight and obviously looking at different things. it isn't unusual to be fussy at 10mths (ds1 existed on breastmilk. cheese, watermelon and fromage frais - would literally refuse anything else - but six months later he ate everything in sight) so i think you just need to explain a bit more to the profs what you mean by 'fussy' ie more emphasis on discomfort, rather than turning down food types etc...

likessleep Mon 08-Sep-08 16:51:56

Re: my last comment was cos of crossed posts! Agree totally with nigeltuffnell and mears

froggyfroofroo Mon 08-Sep-08 16:53:25

you are describing my baby. he is 6 months and ahs been like this since a few weeks old.

he is also having weight problems, he takes more than yours does a day but its still not enough as he is gaining weight so slowly that the gp is now getting worried. i might have to see the paediatrician too but from what you have said im not holding out much hope of getting it sorted.

i think nigeltuffnell might be right with the sensitive tummy suggestion. i have tried sma gold, aptamil, hipp and now cow and gate and its still the same bucking, thrashing, arching and pushing the bottle out, gaviscon has made it a bit better but not enough to make him increase his milk or solid intake.

see this thread i started, there are some good suggestions for boosting calories for the food they will take.

Dalrymps Mon 08-Sep-08 18:12:48

Thankyou everyone for all your support and suggestions.

I do think I'll mention it to the HCP's. Guess i'm a little worried they'll just think i'm grasping at straws or trying to find a problem where there isn't one.

He doesn't gag when just crawling around and then swallow as if he's tasted something bad. At least I can't say i've noticed him doing that. I can't say for certain whether he's in pain, just has a general dislike of eating and has little interest or enthusiasm for it. He will get upset if he doesn't want to eat and you push the issue.

froggy - nice to know I'm not alone, as odd as that sounds. Will hve a look at your thread, thanks

CantSleepWontSleep Mon 08-Sep-08 18:33:49

What is the new milk that he's now on?

Dalrymps Mon 08-Sep-08 19:05:49

It's called SMA high energy.

desperatehousewifetoo Mon 08-Sep-08 19:30:42

I used to work as an slt and specialised in feeding difficulties.

From all the symptoms you describe, your baby could be suffering from reflux and oesophagitis (where the oesophagus is painful i.e. burnt from the stomach acid continually being brought up with food/milk).

I would definitely bring this up with your gp or paediatrician and ask for a trial of medication (you may need to try something stronger than gaviscon) and if there is no improvement, I would ask for a referral for a feeding assessment by a speech and language therapist.

Of course, this may not be the case at all but the situation must be so stressful for you all that I think you need support from more than a dietitian and paed (great as they are!).

I also second the advice of writing down the symptoms and being very clear about what is happening. 'Fussy' can mean lots of different things and maybe that is why the professionals have not picked up on it so far.

Best of luck and let us know how you all get on.

Dalrymps Mon 08-Sep-08 21:45:17

desperatehousewifetoo - Thanks for your advice. I was waveringa s to whether to bring it up but I am going to write down as much as I can and we will discuss it at the next appointment.

Obviously, I hope it isn't the case he has reflux or oesophagitis and as the symptoms he displays can be read as many different things I know it's hard to tell. I would like to know one way or the other though so I know what it is i'm dealing with.

Would it be just the normal gp that would prescribe the medication? Will they know what to prescribe that is stronger than gaviscon?

Thanks again.

GodzillasBumcheek Mon 08-Sep-08 22:15:22

Ok i'm not the best person to advise because we never got a formal diagnosis (just a MN one!), but;

DD3 was very much like yours but we bottle fed from the start. We eventually found she managed the milk better in more feeds with smaller amounts than the average baby (ie: her peers were having 4 large feeds a day while she was still having 5 or 6 small to medium). She also had to drink it lying flat on the floor with her head on a (rather flat) cushion - the day she decided she could drink milk in my arms again was tearful!

She improved alot after weaning, but she needed again more frequent meals of smaller amounts - she still does at 20 months old, and she REFUSES to drink more than a few sips of milk, so most of her calcium intake is fromage frais and yoghurt, which of course are thicker and she manages better.

Her bedtime 'milk' is one of those large wholemilk Wildlife or Petits Filous yoghurts, and a biscuit or/and a few rice cakes, because she can't manage enough at dinner to last through the night.

Sorry, may not be practical now but may give you a few ideas for later.

Dalrymps Mon 08-Sep-08 22:23:41

Thanks Godzilla - good tips, nice to know that there are other ways round it and he doesn't have to do what all the other babies do.

You seem to be coping with it well and I am glad for you that you have found ways round the problem smile

Flowertotmum Mon 08-Sep-08 22:37:47

Hi

Speech therapists are often trained as feeding specialists - I have a friend who is and she is really great, if you want to talk it through.

If you want to take it a step further, google the College of Speech and Language Therapists or ASLTIP (Association fo Speech and Language Therapists in Independent Practice - a mouthful) for information

Good luck and I hope it helps

Dalrymps Mon 08-Sep-08 22:44:30

Oh thanks Flowertotmum smile. Do you mean I could talk it through with your friend? Is she on MN?

I'll have a google on the net too smile

Romy7 Tue 09-Sep-08 09:22:22

it was our slt that suggested the gp prescribe gaviscon as a trial - dd2 had a feeding slt from birth to her other ishoos... if ds isn't gagging coughing or retching/ spluttering, the gaviscon will probably be the first thing they suggest... i'm assuming that he doesn't suffer from recurrent chest infections (due to possible aspiration) etc etc?
www.new-vis.com is a good site for more 'mechanical' feeding issues, but slts will mostly work with babies who have problems swallowing etc - hopefully if it is reflux and it can be sorted reasonably easily, then the slt would not be required.

Dalrymps Tue 09-Sep-08 09:36:00

He doesn't really gag. He does cough, he just did now after eating his breakfast. He has coughed and then retched a few times but what he does more often than that is to out his fingers in his mouth and make himself retch.

We discouraged this as we didn't want him to make himself sick but he still does it sometimes. One thing is that ever since he was very young he has always sucked two fingers, his index one and the middle one. I'm now wondering whether he does this to sooth himself like if he sucks them it produces saliva and neutralises the stomach acid.

He hasn't had any chest infections. He has had various runny noses that we thought were colds but never really affected him like a cold, was just more of a runny nose.

He had a stomach bug and when he had this he would cough everytime he was about to be sick, although, I don't know if all babies do this when they're going to be sick.

Do you think I need a slt to suggest a trial of gaviscon or can I just ask the gp myself?

How did you get a referal to a slt? Did you have to go private or can you see one on the nhs?

Romy7 Tue 09-Sep-08 09:56:41

dd2 was very poorly from birth and had a ng tube for feeding to start with (she was born with no swallow or cough/ gag reflex), so we were issued our slt before leaving hospital lol... it's a bit drastic and i wouldn't recommend it, although it did circumvent the waiting lists! grin
you won't need a slt to get the gp to prescribe gaviscon - just make an appointment and talk it through with gp. it may be that the gp would rather do a slt referral to check other stuff first, but if there's no sign of aspiration or problem with ability to suck and swallow, then there's no harm in doing a gaviscon trial to see if it makes life easier... they might be happy to do this, particularly if you keep mentioning 'failure to thrive' and ds slipping down the centiles etc etc... gp obviously knows you see a dietician etc so i imagine would be happy to give it a go - but i do try never to second guess docs as they have a mind of their own that often works in odd ways. no harm asking anyway! when do you see the paed next?

Dalrymps Tue 09-Sep-08 11:06:01

Hope your dd2 is better now. I next see the dietician on 12th sept and the paed on 23rd sept.

Romy7 Tue 09-Sep-08 11:14:52

dd2 has a few feeding issues left, but nothing dramatic.
hopefully your ds will have put on a bit of weight by 12th, then. we sacked our dietician after the first appointment blush as i just felt it was the wrong approach for us, so not sure if she could get gaviscon for you or not - i'm pretty sure she would defer to whatever the gp or paed said, so maybe discuss it with them first? the dietician may be quite noncommital about it... maybe you could ask your gp and get a couple of weeks with gaviscon before you see the paed? that way you could discuss with the paed whether you think it is making any difference? gp might say wait and see what paed says, but no harm in asking...

Dalrymps Tue 09-Sep-08 11:36:41

Yeah, good idea. I'll see if I can do that. Didn't knwo you could sack the dietician??? I thought I just had to see whoever I was referred to. She's quite bossy and bolshy so I have to be quite assertive when I see her <not my strong point>

muppetgirl Tue 09-Sep-08 11:43:42

Hi Dal <<waves blowing kisses>>>>

Just had a thought, I've only ready your post so this may have already been said x

As the problem is with Dylan feeding has the Dietician ever seen him feed? She would then get first hand what the problem is.
Can you chat to her before your next app to ask is she could observe you feeding Dylan (this may need your app time to be moved so it coincides at a time when Dylan is hungry)

If this can't be arranged what about videoing him so at least you have something to show her. I feel she's not taking you seriously and at least you could demonstarte the problem to her.

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